Abstract

Objective:

The study objective was to determine concordance between patients and family caregivers' preferences for quality or length of life over time.

Background:

Patients with advanced cancer are confronted with difficult decisions throughout their course of treatment and at end of life (EOL). These decisions can be influenced by their family caregivers' preferences for the patient's cancer treatment.

Methods:

Using a longitudinal, descriptive study design from an on-going study, data were collected on an adult sample of patients with advanced stage GI or lung cancers and their family caregivers (n=237). Using a one item visual analog scale (0-100 with higher number indicating a preference for length of life over quality of life), patients and family caregivers were asked "regarding your/your loved one's care, what is most important to you right now?" Data were collected every 3 months until 15 months or patient's death.

Results:

At enrollment, the preference scores between patients (48.5) and family caregivers (42.6) were closely aligned. At the last assessment prior to death, these scores diverged with the caregivers favoring goals associated with quality of life over length of life (p=.02).

Discussion:

Patients and family caregivers have differing preferences and these goals of care can change over time. Attention to these differences could be used to guide conversations between patients and family caregivers regarding preferences at EOL.